Celebration Success and In the Blender

As you well may have guessed, my life has been thrown into a blender and turned onto high!  Things are starting to settle into medium speed now that a week has passed since Steve's life celebration. 

The Celebration was wonderful and sad and exhausting, to say the least.  I'm so pleased with how it turned out.  Steve would have been very impressed and moved by the generous gifts of your time and talents; I know I am.   All agree it was a huge success.  

 

This event would not have been the big success that it was without the work of many talented and willing friends!

Thank you Amy Neuman for spearheading the event: performing most of the organizing and coordination, creating and excuting the RSVPs, word cloud, print outs of wishes and eulogy,  memorial cards, and table center pieces.  Your time and talent were a loving tribute to Steve and are greatly appreciated. 

Thank you VeAnne Virgin for bringing the centerpieces, tying the fish hooks on, and creating the music sound track.  Spot on! 

Thank you Elaine Ableidinger for the beautiful flower arrangements.  They were the perfect touch.

Thank you Deb Mrazek for the AV equipment, framed commitment instructions and tea lights and setting up the memorabilia table and slide show with Sam Lucente. Everyone enjoyed these additions. 

Thank you to each of you who helped with the set up and take down.  You all made it easy and enjoyable.  

As for how I'm doing, I'm staying busy and involved.  My whole family came and I so enjoyed that.  We haven't all been together for 5 years.  Seeing each of you, or hearing from you all was really special and memorable.  Also, I am taking advantage of the bereavement services offered by the hospice organization and I must say, so far it's been really helpful. 

Mostly, all of the support I've received has really affected me more than I can explain. I'm doing OK and grieving and then doing OK again.  It's like waves.  I'm learning to flow with them.  

Invitation for Oct 17th Celebration

The rhythm of life right now for myself and Steve's friends and family is busy.  We are preparing for the Celebration of Steve to be held on Saturday, October 17 in Camas, WA.  

This is an open event to share stories and to honor Steve.  So, if you'd like to come join us, RSVP to Amy at neumanpdx@gmail.com by October 10th.  For more details, please read the blog post dated Oct 5, "Celebration of Steve's Life".  

I'm doing OK and just can't say enough thank you's to all of Steve's and my friends who are helping with the planning.  

Receiving your cards and emails has given me such a nice warm feeling, a sense of connection and sharing that is healing.  Thank you so very much.  

Celebration of Steve's Life

Our friends and family have planned a celebration of Steve’s life. It will be held on Saturday, October 17th in Camas, Washington.  For those of you that wish to attend please r.s.v.p by Friday, Oct 9th to Amy Neuman at neumanpdx@gmail.com or 503-927-2587 and she will send you an invitation.  

The celebration will provide an open opportunity for people to share their thoughts and stories.  If you are not able to attend but wish to contribute, we will create a word cloud in remembrance of Steve.  Please send Amy one word that exemplifies Steve’s wonderful character or what he meant to you. Also, any memorable stories you have but don't wish to share yourself during the celebration, please send them along for integration into a eulogy.  We are also collecting photos for a slide show.  You can either upload them here https://www.yogile.com/steve or you can email them directly to Amy (neumanpdx@gmail.com)

The initial chaos and waterfall are behind me now.  Ahead is the period of rebuilding which will happen concurrently and following period of grief and loss of someone who was at the very core of my life.

I sincerely appreciate all the love, concern and help that I've received during this life changing event.  How can I tell you how important it's been!  

Dixie

Next steps and planning.

Family and friends are gathering around me, holding me physically and emtionally and even doing my dishes and housecleaning! I'm grateful for that.  I just want to post a short blog to say that we are planning to have a life celebration for Steve.  The date, time and place are being worked out.  Our target date is October 17 near Camas, Washington but this is far from final.  However, as Steve would have done, we are sharing as the ideas are in the works.  More later.  

Journey to Peace

Peace has arrived for Steve. 

He completed his journey at 3:20 today in the arms of family. 

Family and Friends Time

Steve's brothers have arrived safe and sound after their non-stop drive from Chicago in a rental truck. Wow!  Now all of us are here with Steve.  He's peaceful and quiet.  I've been sharing all of your messages and photos with him which are coming from around the world: Tailand, China, Peru, Norway, Ireland to name a few from far away.   We are so grateful for your heartfelt expressions of affection and respect for Steve.  What a wonderful testament to his life that he has live so well.  

Vigil

Dear friends and family.  Thank you all for your wonderful notes, emails, texts and visits.  They mean so much to me and Steve.  I read them all to him as I sit next to him, at home, peacefully and with a full range of feelings.  Today, he's sleeping more, opens his eyes, smiles when I kiss him.  He says he's not hurting and seems comfortable.  Gregg and Kevin should arrive later today and we are looking forward to seeing them here safe and sound after their drive from Chicago.  It's a long story, but they had to drive here.  

We think he will be with us for the better part of this week, but of course, we are only guessing.  We may know more when the hospice nurse comes today.  If things change, I'll post an update.  Also, if you want immediate access to the posts, you need to go to the website and not wait for the automatic distribution which occurs about midnight each day. 

Thanks again everyone. 

On Hospice Care

The last time I posted, Steve was weak but getting around some.  Unfortunately, his journey is moving much faster than I ever imagined.  Today, I became so concerned that I called the hospice and asked them to send someone out to us.  We were supposed to see our regular nurse for the first time on Monday, but I sensed we couldn't wait til then.  Time for help. Loni came out and got us both settled, more comfortable, and explained everything I can do for his comfort.  Just what I needed.  Steve and I asked her directly "how long"?  She didn't know exactly, but said it's days. He's in the stage where I cannot leave him unattended, not even for a short errand. Also, it's time to call in family. His brothers are on their way but won't arrive for several days.  Steve's brother's partner is a licensed nurse practitioner  who has first hand experience helping during the dying process and she's coming tonight to be with us.  I about cried from relief and gratitude!  

Many of you have expressed a desire to visit.  I'll be checking with him day to day, hour to hour on his energy levels and he'll let me know what he wants to do.   Meanwhile, if you would like to say anything to him, send a message and we will read them to him.  

So, the next steps are before us and we will all do what we can, each in our own way.  

Settling in at Home

You all must have filled in the blank air time and firgured out that Steve is home now.  Jude and Breeze were so excited to see him!  When I can't find Breeze, I just look on Steve's bed. She's there with him.  Much of our focus is on working out where and how to keep him as comfortable as possible. Being as weak and exhausted as he is, Steve spends the most time propped in a bed.  He's able to move to the family room about once or twice a day to his new La-Z-Boy chair.   He's able to get to and fro with a cane now.  Unfortunately, every movement is a struggle and tires him.  

Today, we had our hospice intake meeting which went well.  We will meet our nurse and social worker on Monday. It's reassuring to both Steve and me that there is an expert team at our backs ready to help us and educate us on the rest of our journey.  Many of you have shared stories of your experiences with hospice. Thank you.  That also helps.  

We just want each of you to know that in whatever fashion you are helping, we notice and your thoughts, prayers, energies, cards, emails. texts, food dishes, poems, pictures for "The Wall", cleaning up apples in the yard, book wrangling, and phone calls all add bright little spots to our days.  Thank you seems so inadequate so I'll just say you've touched our hearts!

Today?

What an experience trying to get Steve released from the hospital. Seems like they don't want to let him go. Read in here that he's not home yet! We've managed all the hoops, and he's dressed and ready to go but the hospitalist forgot to give us a prescription for a medication. So, we sit and wait a little longer while they chase him down. I'm thinking he's at lunch! LOL!    

Steve's pain is managed well, but as you can imagine, leaves him groggy and sleepy. He's still on top of things though and was the one who caught the missing prescription. That's our Steve. 

Choices

After much soul searching, Steve and I have decided to stop any further clinical trials and to return to the comfort of our home.  We will engage hospice care so we can now focus on quality of life rather than his cancer.  Over the last few days, his blood values have stabilized.  But, the white blood cells are still high after all of the various treatments he has tried. He is very weak and has difficulty eating.  Engaging hospice will allow Steve to be at home where he can enjoy the benefit of being near family, Jude and Breeze, and friends. We are not sure when Steve will be released from the hospital but are hoping it is soon. 

What Matters Most at End of One's Life

We resonate so much with this TED talk...http://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?utm_campaign=social&utm_medium=referral&utm_source=facebook.com&utm_content=talk&utm_term=social-science#t-39960

Awaiting More Clarity | Just in Time Delight, Keeps on Giving

Hi Steve here. I'm feeling better and have more energy than in weeks. Now to work on gaining weight-I never thought eating would be a chore. A set of MRI scans I had in the wee hours of the morning hold the promise of providing the most insights to what's going on in my GI tract; particularly since my white blood cell count continues to rise - yet standard tests for infections do not reveal any. Here we are at 8 pm and have not seen the results from the radiologist. 

Dixie brought into our hospital room a stack of pictures that she shared with me then began creating a collage of them on the wall in front of me. You can still send something to dixieandsteve360. (We'll be posting a few more Dixie left at home). It's funny, every time I look at the collage I am more deeply touched by it. Thank you so much.

Taking It's Toll

Another test was ordered today- an MRI to try to determine why Steve has a persistent infection and climbing bilirubin levels.  We will get the results tomorrow. Meanwhile, Steve is feeling very weak and exhausted. He's very ill.  Visiting and talking on the phone and even texting are actions that require his energy and he doesn't have much of that.  

His friend, Deb, came up with a great idea.  We know you all want to help, so you can send Steve an image, photo or whatever you'd like.  As long as it fits on an 8.5 x 11 sheet of paper, we will print it out and tape it on Steve's walls.  If you want to send something, send it to dixieandsteve360@gmail.com or debmrazek@gmail.com.  

 

Filling in Some Information

We seem to be getting a better picture of Steve's condition. Here's a summary: an ultrasound showed clots in both legs; he has had an inferior vena cava filter put in to catch any migrating clots; the bowel bleeding has stopped; the CT scan did not reveal anything helpful; his platelets have stabilized, the hemoglobin and hematocrit have been very worrisome but seem to be ok today; he's had multiple blood transfusions; he's had night fevers and the white blood cell count is up as well as his bilirubin levels; he's on IV antibiotics to address possible infection. Too much data?  That's about how we feel!   What does it all mean?  Well, for sure he will be in the hospital at least a few days more and we wait and see.  It seems many of these things except the infection part are rather common with pancreas cancer.  

Our days are filled with nurses and doctors coming and going. With vitals bring taken, blood pumped in and then drawn out again. What a different world!

New Developments

Today, Steve is still in the hospital.  His situation is complicated and seems to improve in some respects and gets worse in others.  I would love to have details to share on what's happening and why. But there are no clear answers right now. It seems most of this is the result of the cancer and/or chemo.  Overall, what's happening is not good or very encouraging.  Dixie is doing ok for the moment. Thank goodness the hospital is about 15 minutes away and she can run home to take care of  herself and dogs as needed.   We know many of you are wondering if there is anything you can do to help.  We are grateful and comforted knowing that help will be there when we need it.  We will let you know when, what and where we could use help.  

Thank you for all your kind messages and please forgive the absence of response. Your care means so much. Maybe what Dixie really needs is a blog ghost writer!  

Collaboration and Deductions

The first thing on my mind is how Steve is doing.  Today, he's bright, alert, and on top of all that's going on medically and doing an excellent job supervising the nurses in his collaborative way.  It's so nice to see him in action!  Also on the plus side; he's now in a quiet private room!  What an improvement over his last room.  Think noisy, irritating roommate while you are weak, exhausted and stressed out. 

The medical picture is next.  The medical team here, and including his oncologist at Virginia Mason,  are postulating that he may have an infection somewhere.   They started him on IV antibiotics this morning.  High on the suspicion list is his bile duct or the area of the stent.  So he's getting an abdominal CT scan this afternoon.  They ran a battery of blood test to look for disseminated intavascular cooagulation (DIC).  The results were not consistent with DIC.  I'm glad to see there is medical sleuthing happening!  

I hope this gives you all a clearer picture of what's being done even if there are no answers yet.   I do understand how not knowing is hard. 

Paste Frowny Face Here

Dog gone it! Steve's blood counts are not cooperating and the hospitalist says he will stay where he is for now. She is uncertain why this is happening and will be discussing what's next with us. I don't know how worried to be right now so it's good to be under constant observation. Wish it were  better news.  

Better Today

Steve is better today. We are pretty sure he'll be home from the hospital tomorrow. Yay!

What's Happening Now

We are seeing  a welcome stabilaztion of Steve's blood levels which means the internal bleeding is much less. He's headed in the right direction.  Today, the doctors felt he did not need to be in the special care unit and was moved to the regular care unit. He will stay tonight and be assessed tomorrow. I know you are all anxious to hear news. Right now, we are uncertain of the implications of all this and will share as we learn. 

Back in the ER

Last night, Steve started having apparent GI bleeding again so we took off for the hospital at 2 am.  It seems like the same thing that happened when he was admitted into the hospital in June.  So, right now, he's resting comforably, has had transfusions to help his blood levels recover.  The plan is that the transfusions will help his blood clot and the bleeding will stop.  Right now, no one knows where the bleeding is in his GI or why.  We'll see what the doctors propose about that tomorrow.  I'm glad to see him more comfortable and he's resting better than he has for a long while.  They have managed his pain pretty good which is relief for both of us.  Once we find out more, we'll let you know.  Thanks, everyone for your ongoing support!  It means a lot to both of us.  

Oxycodone Ughh!

Tried Oxycodone in place of Vicaden last night- yeow! Be side effects of Oxycodone kept me up last night. Will be getting back to Vicaden ASAP

New Infusion Cycle, Doing Okay

Steve's infusion went as planned. The doctor prescribed stronger pain relief so Steve can be more mobile and sleep through the night. Steve'll try it! Hope it doesn't make him hazy.

So far 24hrs later Steve is feeling like he's got the flu coming on (typical) we'll see what the next day will bring.

We still need to share Steve's birthday at the beach (that happened last week! Stay tuned.

Any Movies You Think We'd Like?

We're looking for your recommendation on a movie (on Netflix, Amazon, etc) you think we'd enjoy; got one or two for us? Thanks.

Blogged Down | Top Line Takeaway

Blogged Down

We've delayed making an entry for too long-so we've ended up with way too much for one entry, and gotten us locked up, so will release a number of more bite-sized entries over the next few days.

Top line Takeaway on Steve's Condition

. Steve continued to have a rough week from the chemotherapy: lucky this is an off week, so he could recover further. But it's taken a lot of his energy and he's lost weight.

. Pain in Steve's abdomen has grown had become pretty constant, triggered by jostling or repositioning himself. Steve always thought pain was a bad sign, it turn out that pain can come from shrinking tumors; so Steve is hoping this is the cause of the new, persistent pain that can be managed with regular doses of Tylenol. 

. These developments have been challenging for Steve. Seeing he will need to scale back by as much as a 1/3 how much he can achieve during treatment. 

Family & Friends from Afar | More Than I Realize

Dixie and Steve enjoyed having Dixie's mom, Emily, stayed with us last weekend, during the garage sale. Then again tonight before flying home. 

We're equally delighted to have our friend, Heidi, from Chicago hanging out with us this weekend. It's so good to see her! We're both excited about her new job as a director focused on customer/user experience innovation. She's got great technical and social skills that we're sure will help her excel in her new role.

Unfortunately Steve's treatment has taken more out of him this week than I expected or even realized, until Dixie pointed this out to him. Also, Steve's pain is becoming more persistent. Though it is held at bay with regular Tylenol. This has influenced and somewhat limited what we chose to do during Heidi's visit.

Steve is looking forward to a couple midweek days on the coast with Dixie to celebrate his 58th birthday-and yes, we get to bring the dogs along!

Garage Sale | Back to Seattle | Clovers

Our garage sale was a success. And may not have happened or at least been as successful without your help! Thank you downpour help in setting up and running the sale! It's felt good to let go of some dead weight we've "carried" for far too long! Steve will continue to eBay some of the items he's confident will sell there.

We're in our way back north to Seattle for Steve's infusion today. Despite indications the treatment is working, Steve is experiencing a bit of persistent low level pain that the doctor had suggested using Tylenol to alleave.Its unknown what is causing it and whether the pain will increase, decrease or stay the same.This has gotten Steve in a funk 

that he is feeling his way through. Chronic pain that increases over time is not a future state Steve would relish, though sadly is a possibility.

Finally one of Dixie's hidden talents is to spot four leaf clovers. After the first day of the garage sale she was with my brother Gregg  in our backyard and spotted in a 20 square foot patch, eight four leaf clovers and one five leaf clover. What were the odds of that? I'll stick with Dixie to increase my odds :-)

Skipped Infusion This Week

Bad news, my blood work showed my platelet count was too low, after driving all the way to Seattle. This could mean the chemo from last week is still working away, or ?. Good news is that I have another week to recover from side effects. And my planned visit with friends in Seattle after my infusion has been more pleasant. We'll try the infusion again next week.

Share, Assist? Garage Sale This Fri & Sat

We're having a garage/workshop sale to sell items too big to be worth selling via eBay. It'll be from 10-6 this Friday the 14th and Saturday the 15th at our place. 

We could use help on Saturday, since my brother won't be available, if anyone's interested in hanging out with us.

Details here: http://portland.craigslist.org/clk/gms/5162996852.html

Also please pass this on to anyone you might think would be interested.

Thank you!  

Weekend of Visiting

Friday: Dixie's mom is in town, staying with family in White Salmon. We drove out to visit them on Friday, and also to meet their new alpaca family! We had a wonderful brunch Jo prepared then took the dogs swimming on the Columbia River. 

Saturday & Sunday

Steve's good friend and long time fishing buddy, Herb, that now lives in the east coast came to visit and stayed with us prior to going to a fly fishing conference in Bend taking place this week.

Then too on Sunday Jude earned her K9 Nose Work 2 title. She's a bit slower at 15 yrs but just as stable and steady as ever!

We're so grateful to have each of you as traveling companions on this journey.

We Are Relieved: Modest Results From Treatment

We're relieved to learn that the aggressive form of pancreatic cancer Steve has, has stopped growing, blood markers seem to confirm it, and the tumors on Steve's livers have diminished in size. And he'll continue in the study. Whew!

Your well wishes, positive energy and prayed have definitely helped Steve. Thank you.

Wonderful Night in Seattle

We had a great stay here in Seattle yesterday thanks to a couple friends that put us up prior to today's therapy session! Yesterday we had drinks and appetizers at the Hilton exec lounge (see picture), then later dinner down the street at Palamino's. We walked around downtown and then walked over to REI's flagship store (Dixie had not seen it before; she really liked it). Later we se Uber to get back to the hotel. Once back, Steve was certainly ready to relax and sleep in our nice room!

Tuesday - Moment of Truth: Is the Treatment Working?

Steve has a CT scan on Tuesday morning August 4th, prior to beginning anther round of chemo, to determine if the two months of chemotherapy is working to slow or reduce the cancer. If it is working we continue with the routine. If not, and we don't like to think about this...time to try something different; perhaps we will be forced to find another clinical trial - and back to improvising as we go again.

Your prayers, thoughts and well wishes that the current treatment is working and will continue to work, are much appreciated.

Steve is  grateful for this past week off from chemo, it's allowed him to renew body and soul. 

Thank you

Steve & Dixie

Steve's Really Nice Time Fly Fishing

Coldwater Lake Fly Fishing Club Outing

. Mt. St Helens in top picture

. Everyone caught & released trout-beautiful colors and very frisky 

. Comfy seat up front on the cooler on the raft

. My fly fishing buddies - for the day and beyond. Thanks to them especially and other club members too, for the great companionship, the wonderful time and smoothing the way!

More Energy Than Ever | Adding Sweetness to Life

This has been by far the most energy and best Steve has felt since starting chemo two months ago. This week off chemo has been good for his and Dixie's spirit and soul. Steve realizes too that he'd lost much more energy and strength than he ever realized. 

With four more days before he's expecting to have his next infusion, Steve and Dixie are trying to plan out how to balance making most productive use of his energy as well as enjoy themselves. Our friends' generosity are helping us decide. Saturday some of Steve's fly fishing friends are taking him fly fishing. He's really looking forward to it! 

And another event Steve and Dixie are looking forward to is a stay at a very nice downtown Seatle hotel. A couple have generously donated their hotel points to put Dixie and Steve up at the hotel with some very nice extra perks this coming Monday; this is the night before Steve gets tested to see if/how effective the chemo has been and (hopefully) proceeds with further treatment. Thank you two for enriching our experience!

The Sweet Spot Between Good Times and Getting Things Done

"3.   Most people think happiness is in the future"
"13. Happiness is knowing how to celebrate"

          List from "Hector's Search for Happiness" 

The First Sweet Spot This Week
Steve's brother Gregg, came down from Bellevue this Thursday to visit through Saturday afternoon, to help us downsize - amongst his many talent's, he's the family eBay expert. He's helped us set up a doable system to sell things on eBay as well as helped Steve post things himself. All the while Steve has been gaining energy daily since his treatment on Tuesday. We had a good time coming up with practical ideas and setting them into action together to downsize. We're fortunate to have such warm, caring and generous family members. Thank you Gregg. And thank you Chari for taking care of the kids while Gregg was down here!

The Second Sweet Spot
One of my fly fishing friends and his wife cooked then brought over a full dinner to our place this Friday.  The five of us, including my brother Gregg had a good time together (We're so happy to have leftovers of everything since the dinner was so delicious! Thank you, you two!).

Then around 7:30, four more fly fishing friends came by to help with a second round of sorting fly tying and fy fishing gear. This group made short order of determining what Steve should consider donating or selling (all towards relieving Dixie of the burden of all my stuff).

Thank you, each of you, for creating a perfect blend of a good time with good friends and family, and getting stuff done.

Better than Before | Thankful

Well the meds, including the steroids really have taken care of Steve's chemo side effects. The steroids do though, keep him jazzed for the first 24 hours. More significantly, Dixie and Steve will no longer need to stay the night in Seattle after his infusions! And next week is a recovery week- a week off from chemotherapy.

Steve's brother Gregg is back down from Bellevue as the primary driver behind posting so much of the stuff Steve has accumulated but wants to sell on eBay. His experience and help is invaluable. Thank you Gregg! Steve wishes he had 1/4 of the energy Gregg does to more fully help with this part of downsizing!

Like Last Week - What Infusion? Summer Break

Like last week, Steve doesn't even feel like he's had an infusion! So we passed the meds we used overcame the worst chemo thrown at the cancer so far! 

The secret is steroids - and the downside. I'm prepared to come off of the single injection of steroids about mid afternoon today (Wednesday). What this feels like is that I have really low blood sugar and just want to flop down for a couple hours. I was not prepared for this last week, but am this week.

Good news! With the meds for side effects dialed in, we may be able to return to same-day trips for infusions, rather than renting a hotel room every week. 

And Steve feels like a kid on spring break! He officially skip infusions next week! 

Test of Meds to Prevent Side Effects

Steve here: Okay, this week I'll see if the meds given to me to prevent side effects due to study drug are effective. We tried preventative drugs last week with just standard treatment drugs. This is the real test.  Hoping we've got the right combo of preventative meds dialed in now, so we don't need to stay overnight every week from now on.

I'm thankful for having a good week last week and so many caring friends and family. I'm thankful for Dixie's unwavering, ongoing love and support. Adavan is kicking in, getting drowsy-more later :-)

Quick Update - All's Well

After on Thursday a nice visit with Jerry, Dixie's brother from Houston (rode his BMW up and stopped by on his way to a rally), then an unplanned trip to the emergency room for Steve (he had hard chills and fever, but checked out okay) Dixie was set to leave for the weekend, to participate in the much anticipated Portuguese Water Dog Water Trials at a lake a few hours north of us. She'd been practicing since early spring with friends (and the dogs of course) for this.

About an hour after she left, Steve got a call - our truck and quit running, and fortunately Dixie was able to guide it and the travel trailer over to the shoulder on I-5. She was waiting for a towing service to get the truck to a local repair shop. And had in the mean time come up with a plan to still get to the event (way to persevere Dixie!). With Jerry's help, Steve got the van prepped, then he drop to the repair shop where Dixie transferred everything she' need for the weekend into the van, though now she was going to stay at a motel. Then she drove Steve back down to the Portland airport, where he rented a car for the weekend, so he could run the errands and meet friends as originally planned. So though the weekend was off to a shaky start it ended up well.

As you can gather from this blog entry, Steve was feeling pretty good this weekend. He was more energetic than he'd expected he'd be. So both Steve and Dixie enjoyed their independent weekend plans and came back "re-created".

Finally we wanted to thank a couple we like and trust very much for being the emergency go-to people for Steve this weekend. Your being there gave Dixie peace of mind and Steve assurance he was not alone should an emergency arise.

Steve's Infusion Day

Photo right after Steve's infusion today. 

Steve is feeling surprising good after the  infusion today in contrast to the prior infusions. This has been mild - the difference, we think, is that he did not get the study drug this week.  

So mild that Dixie and Steve were able to take advantage of the Hyatt Olive 8 facilities and had a nice dinner of crab cakes on a feta-pea salad, macaroni & cheese with crab and house made pickles. Yum!

Then Dixie went to the whirlpool while Steve slid into bed ready to watch a movie once Dixie returns.

Grateful for Our Friends

On Sunday we learned how deep friendships really run. Four fly fishing friends came over this morning to sort through Steve's fly fishing books and rods to figure out what to donate, what to sell for how much, and who might be interested specific items. The work they did in a couple hours would have taken Steve days. Thank you friends.

Sunday afternoon we were mentioning to two other friends visiting us that the hotel we were staying at the night of Steve's transfusion didn't have vacancies this week. So, we were staying a 30 minute drive away- very iffy given how fast and hard Steve has been hit by the  side effects in the past. Our dear friends used their frequent hotel points towards  securing us a room at a hotel in downtown Seattle just blocks from Virginia Mason. We're deeply touched by this act of generosity and kindness. Thank you dear friends!

A number of friends over the past two weeks have brought us prepared meals-they've been delicious and provided us much more than just nutritional sustenance. Thank you. 

And fronds and family have been sending us cards and emails wishing us well. Each message bouys our spirit that much higher-thank you!

Finally our dogs Jude and Breeze may not understand, but we totally appreciate the team that has been taking care of the dog when we are up in Seattle. When we arrive home the dogs are more relaxed and content than we are! Your insights and understand of each of our dogs makes the difference! Thank you!

May the generosity and kindness you've extended to us be returned many-fold to you in the future.

In This Case No News is Good News

Well The good news is that Steve has had quite a bit of energy the past few days so he and Dixie have been keeping busy. Dixie has arranged for and managed a large scale project to take out and prune trees and trim bushes-thank you Emily! She's also resumed grooming fewer Portuguese Water Dogs and training Jude and Breeze. Steve's been getting squaring away some legal matters, prepping items to sell on eBay and providing some insights and suggestions on friends' business projects. At a friend's suggestion Steve is volunteering with a regional community foundation, helping with the local group's planning as well as "manning" a booth at events. 

Steve is at about 80% of his energy level and 60% his strength - his two weeks in bed really affected the later. He's picking up some strength building along with the walking and yoga he's undertaken. 

"Chemo? What Chemo?" Slam "Chemo? What Chemo?"

Well Steve had a full course of chemo treatment last night, along with new meds to reduce the side effects brought about by the experiemental drug. So the good news is that Steve is more than likely getting the experimental drug.  

After our last experience, we opted to stay overnight so Steve's side effects could play out in a motel room, rather than in the  car. Good thing too - the new meds did a better job of curbing nausea and diarrhea, but did not eliminate them. He was fine walking out of the hospital ("chemo? what chemo?") , but the side effects overtook him within an hour. So, once we checked into the motel Dixie steered Steve to bed where he crashed out, making frequent trips to the loo. 

Then about midnight we awoke to the alarm clock the former guest had set as a "favor" for us. Steve noticed he once again felt good ("chemo, what chemo?"). He slept though the rest of the night soundly. 

This morning he woke up okay, hungry and thirsty. So today he's up and about, crusing home (thank you for driving Dixie)  operating like he'd just not had enough sleep We'll see how the day progresses!

Yikes! Trying Full Strength Dose of Chemo

Dr. feels Steve has bounced back enough to try a full dose again and we are better dialed into dealing with side effects now. So here we go!

Okay Here Goes Another Round of Chemo - Staying Whole

Steve: I'm writing this while Dixie is driving us up to Virginia Mason to begin chemotherapy after a week off. 

I'll say this out loud now, so I own what I feel rather than my feelings own me.  I'm angry and sad that I have to go through this, and fear that for all I'm going through, it might not work. For me, acknowledging what I feel is what provides me the power and integrity to maintain a positive attitude, to progress, and keep our challenge and journey in perspective - that Steve needs a part of his whole healed.

So we'll do what we need, and hope that the therapy is working. We have another month before we'll know for sure. We appreciate you keeping your fingers crossed, that we are in your thoughts and prayers, etc. that the chemo is working.

Stretch to Exert Now, Get More Energy Back Later

On Sunday Dixie and I did our own things with others. Dixie spent the morning with her friends training our dogs Jude and Breeze for upcoming Portuguese Water Dog Water Trials. In the  mean time, Steve did some grocery shopping then met some friends for brunch at their place. Steve needed a brief rest in the early afternoon, before going fly fishing for the evening with a group of friends that happen to be in the same fly fishing club. The fishing trip was fun, and Merrill Lake, our fly fishing club's home waters, was as beautiful as ever. Steve hooked a few trout including a 14-16" brown trout, but alas was unable to bring any of them to hand. This fishing trip lasted 8 hours, and though Steve was a passaenger in the car and rode in David's boat, Steve was definitely exhausted when he got home - he fell asleep as soon as his head hit the pillow.   

Steve woke up with even more energy on Monday - he felt he had practically as much energy as the day he started chemotherapy! In general, Steve's feeling no pain, though has pretty constant GI turbulence. 

So what has Steve learned? He's convinced that pushing himself physically just a bit before resting, be it yoga, walking, shopping, fishing, etc., really helps him regain more energy when he recovers.

Celebrating Her Half Year Birthday

Well Dixie's birthday is on January 6. This is just when everybody is pretty much partied out, running thin on giving juices and the weather is typically sucky. Let's face it, she's gotten the short end of the happy birthday celebration stick. 

So for the past couple years Steve has been throwing modest celebrations for Dixie's half year birthday - which turns out to be on July 6th. So at least she gets two birthday celebrations a year. 

Please join me in wishing Dixie a Happy Half Year Birthday! 

Beacon Rock State Park July 3 2015

Step by Step, Literally

Steve is regaining his strength literally step by step. He's up to 2-3 hours of activity followed by 1 hour of rest. Last night we took a nice 3/4 mile walk with the dogs during sunset at Beacon Rock-it was beautiful!  Then we went to the Vancouver Farmers Market with a friend for a couple hours this morning. Steve even did a bit of street photography at the market, which brightened his mood. Then off to another friend's house for a 4th of July dinner. Being with friends has made our experiences all the sweeter.

Between yoga, errands and walking,  Steve is trying to regain as much energy and strength as possible before beginning another 3 weeks of chemotherapy (starting this coming Tuesday).

3 Gratitudes

. For Steve's best and most energetic day since starting chemo

. For friends that help us in seemingly little ways that end up making our day-like coming by to chat awhile.

. For seeing the magic in a moment - like noticing the shadow of my hand in a moonbeam.

Sicilian Pizza & Yoga

Hi, Steve here. 

I had a dream last night that I was out late at night with friends and we stopped by some street fair for a late snack. I had a real craving for a piece of Sicilian pizza like I've had in Boston.  And sure enough, we found a busy popular place selling fresh hot squares of the pizza. Now the only way I could buy the pizza was if my healthcare provider approved my purchase. So here I am, pacing in front of the steamy glass case filled with hot pizza, phone to my ear, on hold waiting for the next agent! When I do finally get through, they want to know the official registered. name of the joint.  "Fresh Hot Pizza" was not listed, and they needed the name of the clerk to ensure the facility and personnel were "in network". Aargh! It's just a piece of pizza. 

I tried yoga for the first time ever today. It was set up to be gentle and focus on breath, energy flow and optimism - ideal for retreating and recuperating! I loved it! It helped me feel my body as a single integrated whole again, the benefits of cleansing itself of toxins.  And yes, despite the 'dis-ease', the rest of my body can be healthy and fit. This experience is yet another life's lesson and experience I've been bestowed that money cannot buy. Thank you friends :-)

Good Day

Steve had a pretty good day today; he's at 3/4 full charge, but a circulatory issue is slowly, painfully working it's way out of his lower left leg - he needs to elevate it or keep walking, otherwise standstill it cramps up. But this is working its way out and is a small price to pay.

Steve went out with or visited at our home today with a number of friends  that brought snacks and meals, discussed plans or shared stories about where some of the work he has contributed to has evolved and/or been adopted. 

All in all a most gratifying day!

Hang Time

Vancouver WA 

Smote with Revival

Well Steve had another infusion yesterday, with reduced chemo ingredients. The infusion went smoothly, though the hours and night after it was really rough for Steve, he felt he was smote by Thor's hammer. Steve is feeling much better, almost fresh. He's optimistic he'll be more functional in the following days than the first chemo session.

Yes! Back in the Fight! Round Two!

Everyone we've met at the cancer clinic has been surprised and delighted how well and quickly I bounced back. My blood levels have returned to normal. So since I'm game, we are ready to do round 2 of clinical trial with lower doses of the standard chemo cocktails that triggered my adverse reaction. We are so happy to have this option and to make this decision. So, here we go again :-)

We Find Out Steve's Options Today

Wish us luck!

Thank You for the Welcome Home!

One of our valued "dog care team" left this note for us.  Thank you Team Jude and Breeze for being so responsive and flexible! You are awesome. This team is no less valuable than the others of you that have helped us with meals, lodging,  meals, well wishes, shuttles, etc.

Dixie got Steve home comfortably just after noon.  She tended the yard while keeping an eye on him as he dozed for a good chunk of the afternoon on the back porch. After that,  he interspersed small periods of activity with rest. He is happy that his sense of taste and appetite are returning. 

It's nice to be home for a couple days before heading back up to Virginia Mason Hospital for a day trip on Thursday ("Gilligan's Island" lyric "for a three hour tour" playing in background).

Cleared for PDX

Docs tested Steve's blood levels this afternoon which are at the lower end of acceptable but rising. So they said it was ok to return to Portland (PDX).  We are resting and recuperating in Seattle tonight in a nice hotel and will drive home tomorrow. Back to Seattle Thursday for an appointment with the oncologist. 

Steve has an appetite again and resting with little discomfort. 

Night on the town involved room service.

Past Clear & Present Danger

Well the hospital released Steve today provided he stays within 1/2 hrs of it. The clear and present danger is past. Steve is to self monitor. He is staying at his brother, Gregg and Chari's place, (again -thank you!). 

Steve just noticed he still has his DNR wristband on. If it were not him and some healthy teen, it'd be gruesomely cool to wear it around. 

Getting the Latest Updates

Hi All,

We understand some of you are not getting our latest updates. There's two things you can do to change this.

First, if you do want to subscribe to our blog, you need to use a laptop or PC to go to our blog then in the right column enter your email address and submit it to receive a notification of every new blog we post. However, update notices are sent once a day around midnight, so for the latest blog go directly to our blog.

Second, you may need to refresh the blog post page since it does not automatically refresh when we post new blogs.

Hope these tips are helpful. As you can see I'm feeling a bit more energetic today. Thanks

I wonder if I can eat a pizza

Quick summary: after receiving blood transfusions all night, Steve's blood components appear to be stabilizing and his platelet count is up enough for the doctors to feel his bleeding risk is much reduced. He was bleeding somewhere in the GI tract. 

It's kind of like fix-a -flat tire spray. Spray some platelets around, give Steve a spin, then see if he still leaks. So far the leaks seemed plugged.

Right now, he's feeling better: more alert, more energy, better color, better appetite.  We all are hoping all of his blood numbers stay stable and in the safe range. 

The immediate plan:  Steve will remain in the hospital today and tonight. If he is not bleeding and his numbers are good, he may be discharged tomorrow.  However, he will stay in Seattle until early next week and have regular blood tests done to check the levels.

Turn of events- rallying point

This is an occasion I'd appreciate you  rallying on my behalf, bringing your wishes, prayers and positive thought to bear on one thing. This was to be a routine visit to Seattle for my second chemo session. Instead, I've developed a life threatening condition called Disseminated Intravascular Coagulation (DIC), which is a serious blood disorder.  My blood is low on platelets that are not being replaced.  The DIC may be due to cancer or the chemo or both. I may rebound from stopping chemo. I need to rebound ASAP. I'll be in the hospital at Virginia Mason Medical Center in Seattle until this condition is stabilized. 

Before, my focus was on quality of life, now it's on life. Be it shorter or longer,  I want to thank each of you for lessons each of have  bestowed on me. 

The Long Week

The chemo treatment last week put Steve out of action throughout the weekend. On Monday, he rested some more while waiting for the bile duct replacement procedure scheduled for Tuesday. The procedure  was done at a local hospital in Vancouver and went well and we learned how different hospitals' care can be. We are spoiled by the attentive, informative, team based approach used at Virginia Mason in Seattle.  

Steve felt better on Tuesday afternoon but Wednesday turned out to be another tough day. Then Thursday, we were off to VM in Seattle for another chemo treatment. However, his blood labs showed a dangerously low platelet count. This is one of the vital clotting factors in the blood. So no chemo this week. In addition, his bilirubin levels are high which caused his doctor to think something might be wrong with the new bile duct stent. A CT scan was done. It showed the stent is OK but that the cancer is growing quite fast. His oncologist said it's good that we are pursuing it with an aggressive treatment. 

To add to an already fun day, Steve needed an emergency transfusion of platelets. He was admitted to the hospital for that and an overnight stay. We thought we would be home by bedtime. But going home will wait until tomorrow. 

Finding a New Normal

We woke up this morning and finally felt congruent with the view out our bedroom door:   A view of the bright morning light filtering through the green canopy and  air filled with floral notes and singing birds greeted us. This is in contrast to the prior two similarly superb mornings that were the opposite of how Steve felt after his first chemo treatment. 

We are beginning to get a sense of what a 'new normal' life will be like. Steve is usually quite like the energizer bunny but the chemo has sucked his batteries for several days. Managing side effects like gastric upset  and flu like malaise will be his focus those first few days. Rest, nap, then rest some more then try to eat enough. 

So Steve's typical week will be:  infusion day and day 2; pretty worthless planning to get anything done; Day 3 - light work, moderate focus; Day 4, 5 & 6 - working okay, focus returns. Repeat for 3 weeks, 4th week off. Rinse and repeat.

Yet one more surgical procedure is scheduled for tomorrow to replace a plastic stent in the bile duct with a permanent metal one. It's done as an outpatient endoscopic procedure, through the esophagus. Will be good to get it behind us. 

Experience with First Infusion

Well a couple hours after the infusion Steve began feeling the effects of the chemo. It made for a rough night which in turn made for a day full of dozing and general malaise. Dixie is amazing - she can be sharp and on point with her questions, and power on through on things in ways Steve never appreciated. 

The good news is that because the initial trials went so well that Steve got in on an extension of the trials where it's more than likely he got the special cocktail. 

First Infusion Underway

As you can see it's a perfectly safe, organic and nontoxic solution...

My reaction over the next couple days will be .... interesting.

Here Goes: Our Hopes & Prayers

Had my "power port" put in today - it even came with an owners manual. It's a mixed blessing - I won't have to be poked weekly for chemo for IVs and have angry irritated veins, but it is disturbing being bionic now. 

Ohhhh! So warmmmm.

Now on taking the plunge into the unknown - chemotherapy.  Simply put, what kind and how severely will Steve be affected by the side effects of chemotherapy? This will determine the quality of our life. And how effective is the therapy-this will determine Steve's longevity.

We hope that:

. Steve will be in the 50% of subjects that receives the new experimental drug.

. The therapy and Steve's approach is effective, even curing him (which happens, but rarely)

. Steve will have minimum adverse side effects from the chemotherapy.

Jizu is in a "teaching pose", and Steve and Dixie still has much to learn.

Your Priceless Gift - Thank You

Hi All,

Before we move from this chapter in our journey onto the next, we want to thank all of you that have given us well wishes, thoughts and prayers, been with us, gathered friends, helped us by dog sitting, cooking meals, or provided lodging, given us little things that make a big difference, or offered to us your help going forward. Your "gifts" have given us time to enjoy friends and our loved ones *now -  in the moment*. Holding at bay for us the myriad of chores that lie ahead as we downsize and bring simpler order to our life. 

 Yours are the gift of good times - something money cannot buy. We thank you for this most precious of gifts.

 

Sunshine on Our Shoulders, The Wind at Our Back

Dixie and I went to Cannon Beach to enjoy ourselves together and with the dogs, in advance of my chemotherapy this Friday. 

It was sunny, warm and windy at Indian Beach - Ignore my flapping hair in this picture (no need to ignore it soon anyways ;-) The views were spectacular!

We had a nice lunch in Cannon Beach, then did some shopping. Dixie was immediately drawn to this statue by his warm, friendly and serene smile. I was immediately drawn to him too.

Before we bought the statue we learned this is Jizo Bodhisattva, one of the most beloved and revered highly enlightened beings in Buddhism. Jizo is the embodiment of the Bodhisattva Vow, the aspiration to save all beings from suffering. 

After shopping, we took the dogs out to enjoy the beach with us a second time; this time at Tolovana Beach. Breeze had to investigate this very rarely seen glass box. 

We've got some wonderfully simple but vivid memories to carry Dixie and me through rough spots ahead...with Jizo's help.

Welcome Weekend Retreat

I had a weekend away, out of town with  friends that really "get" me. Dixie did some things with her friend while I was out of town. It gave both Dixie and me needed mental and emotional breaks from thinking about the road ahead. Though I t's been a bit rough today, settling back into what lies ahead in the coming week after such a wonderful weekend.

Breeze Hunting Bunnies

Tick Tock and Terry

Well, I start procedures and chemo next Thursday the 11th -it seems so far off, but it's the soonest the doctors and facilities will be ready. I'm using medication to keep my blood sugar low to slow the cancers growth. It's taken me a few days to learn to fuel up before an activity or risk a blood sugar crash (tired and dopey).  In addition we are meditating and walking  to keep anxiety down.

My cousin Terry was by coincidence, in town from California, on Saturday while my brothers were here. So we had a wonderful brunch together. I felt honored to be in the company of someone that had become an Eagle Scout at age 51. It is an amazing story, and let's just say he's done it now for himself and for all the right reasons rather than for his father. 

Gregg, Terry, Steve, Kevin, Elyse, Jude, Dixie, and  Breeze

Lining Up Treatment | Memorable Day

Gretchen our treatment coordinator emailed to schedule me to start chemo treatment, assuming I am accepted for the trial on June 9th, five weeks since my cancer was discovered, and one day after my port will be installed. This is the best news we could expect. 

I got the news as Dixie, my brothers and Elyse were walking over to see Multnomah Falls. We opted to do a one mile hike to walk behind the Upper Horsetail Falls, rather than hike up the much more crowded path to the top of Multnomah Falls. After seeing the falls Elyse treated us to a late lunch at Skamania Lodge, overlooking the gorge.

Next Steps After Sampling Steve

The procedure for getting a liver biopsy from Steve went quickly and uneventfully. The analysis of the sample will confirm whether or not Steve is eligible for the clinical trial. If so he's set to begin chemo before or after they install a port. If Steve is not eligible, we will still stick with Dr Picozzi-he's by far the best expert around. We should know in about a week or so. 

And oh yeah, here's the artwork in our room to inspire us...

Soup's Up!

Over 20 friends traveling from as far away as Seattle, participated in this year's Soup Swap. Deb, thank you for the brilliant idea of going ahead with this years get-together and then volunteering to host this event. We had a dozen homemade soups to sample from, representing practically every continent. 

We're glad too that in addition to each of you being introduced to some new soups and flavors, some of you discovered new friends. Using soup to share more than soup, is part of the reason we love this event.

Just like eating soup warms us up inside and fill us up, the diverse, warm and open conversations we had did the same for my soul. And as a bonus, Dixie and I took some of it home - they say it's always better on the second day :-)

We hope you found the Soup Swap as warm and fulfilling as we did. Thank you friends.

Steve and Dixie

 

Gratitude for my Fishing Friends

It was nice to have David, Kuni and Brian come by with bagels, cream cheese and lox this morning. Dixie joined us, and we had a great time over breakfast. Then we set about formulating an approach whereby my friends would help me downsize the fishing and fly tying gear I have. I am so grateful to each of them for volunteering their time and effort to our benefit. It a great relief for Dixie and me that they will help us shortly, so we can enjoy ourselves a bit more now, before I hit the rough patch (chemo) ahead. Thank you guys, and Bart and Timothy too- the time we have now is invaluable.i look forward to fishing with you all too!

Then later today I had wonderful and heartfelt  conversation with my good friend and original fly fishing partner, Herb. He's one of those people one immediately feels comfortable and friendly with.

I'm proud to have you all as my friends.

Steve  

A Port in a Storm | Brotherly Love

We had a long day up and back from Virgina Mason (VM) in Seattle today. It's 3 hours each way.  We started by signing the consent for the clinical trial. Then the trial coordinator, Gretchen, squeezed Steve in for a CT scan to follow immediately after the real reason we went up in the first place - for a consult with the surgeon that will install a port through which the chemo will be administered. 

Next Tuesday, we go back to get a biopsy of the liver growth via an endoscope (an outpatient procedure-amazing!) That is required before Chemo can start.  Right now the installation of the port is scheduled for June 8. So starting on chemo looks to be two weeks out yet. As a dear and wise friend suggested, stay focused on the next step, rather than getting stressing out on looking too far ahead. So, today we got  three things off the checklist to starting treatment, two more to go!

We're looking forward to Steve's brothers, Gregg and Kevin,with their significant others, staying with us next week. They will help us start downsizing our possessions, and we plan to have fun together. We are warmed by their generosity and love.

The Peony and the Dragonfly | Betting on One Trial Now

Last Christmas Dixie got us gift certificates for Bottle & Bottega, a place that combines a painting class for newbies with drinking-an essential lubricant for non-artists. We participated in a class focused on mixed media collages - blending painting and clippings from magazines, old calendars, maps, etc. As Dixie noted, it's no surprise we both picked scenes from nature.

I confirmed to MD Anderson we would not pursue a clinical trial with them at the moment. Nor would we pursue a trial with a small local oncology group. So we've got everything riding on a Virginia Mason clinical trial now. Chances seem good I'll be eligible.

Can't Start Treatment Soon Enough - Gulp

Got a call from Virginia Mason to set an appointment to do a biopsy on a outpatient basis - so will have it done next Wednesday. One other procedure and a CT scan, then if all indicators look good, I start chemotherapy.

If you would like a point of focus for your thoughts and prayers, I'd suggest they are towards 

. my elegibilty to enter the trials,

. getting the added immunological ingredient (vs I am control subject that gets just standard treatment; 50/50 chance), 

. the treatment being effective with minimal side effects or complications

Thank you, we love you all. We've been floored by the quantity and depth of support we have from each and every one of you!

    A Japanese Iris growing in our yard.

What We Can Expect | Gosh She's Good!

Worked on getting more around the house in order. Also learning how the biggest delay in our healthcare system may very well be approval from the insurers for tests, procedures, etc.

===========

Dixie has talked about how her class to prep dogs and handlers to do agility. I've never attended her class until tonight! This was the last class, where the attendees actually used all the pieces of agility equipment together. What did they do the prior five weeks? Worked to etablish a stronger rapport and better relationship between team members (human and dog). Only then did the team try the real thing (there's a life's lesson in there somewhere); one or two new pieces of agility gear a week.

Dixie is a very, very good at teaching- wow! I wouldn't have experienced and appreciated this facet of her had I not watched her teach!